Let’s put aside questions of whether a disease is going to kill you or not and concentrate on what happens if it doesn’t kill you. Let’s say God said you had to have a chronic illness but he/she would allow you to choose which one to have. On what basis would you make that choice? My guess is that most people would pick the disease that allows them the highest quality of life and the most functionality.

If a disease doesn’t affect quality of life – how much does it need to be addressed? If it does significantly affect QOL – how much more urgently should it be?

A disease that doesn’t impact our ability to function or to be productive in society or our quality of life, may be a disease that doesn’t need a lot of attention. A disease on the other hand, that significantly restricts our functioning is a disease that our society, purely from a pragmatic viewpoint, should pay a great deal of attention to. A disease that significantly impacts our quality of life is a disease that we as human beings would dread, most of all, of having.

People with ME/CFS often assert their disease is not taken seriously enough at their doctors office, by the public, by their families or by the federal government.

A Danish research group put the impact of chronic fatigue syndrome to the test recently. They compared the quality of life scores of people with ME/CFS with people who had serious medical disorders.

It was put up or shut up time. For ME/CFS to be considered a serious disease it had to pull its weight against diseases like multiple sclerosis, cancer, rheumatoid arthritis and stroke. Could it?

The data for the ME/CFS part of the study came from 112 people associated with the National ME/CFS Danish Association. Except for some questions specifically targeted at ME/CFS patients, the same standardized survey was used in this survey and in a 23,000 person Danish survey. The bigger study examined the quality of life in chronic illness.

Let’s get one thing out of the way first. The big question overhanging this survey was how representative the 112 people coming from the Danish ME/CFS Association were of ME/CFS patients in general.

The demographic results indicated that with regards to age, gender, and socio-economic status the Danish patients looked much like ME/CFS patients surveyed in other countries. The authors agreed, though, that patients joining a group like the Danish Association probably tended to be less satisfied with their health care, more severely ill and more resourceful than patients not joining organizations like that.

They argued, though, that sampling support groups may actually produce a more realistic assessment than sampling patients from clinics, because clinic studies usually miss the more severely ill patients. Since high percentages of ME/CFS patients (relative to other diseases) are severely ill, the authors proposed that their sampling protocol may more accurately reflect the chronic fatigue syndrome community.

The authors also reported that because they ‘extracted’ the effect of the QOL (HRQoL) of ME/CFS from other conditions that might have been present, the study only estimated the impact of ME/CFS. That was an advance over most QOL studies.

Results

The authors looked at median and mean quality of life scores. The median scores are a more accurate measurement of a community because they’re not skewed by people with really high or low scores.

How did the quality of the lives of people with ME/CFS stack up next to those of people with cancer, multiple sclerosis, heart attack or stroke?

They were worse – significantly worse.

Median Scores

People with ME/CFS had the lowest median quality of life (QOL) scores of any disease tested. The next highest QOL score was 12% higher (bleeding ulcer). Next came people with chronic kidney failure with 15% higher scores.

People with ME/CFS had lower quality of life scores than people with other major illnesses

People with the big, scary diseases ( the ones people think – “Please, Lord not me!”) all had consistently higher quality of life scores than people with ME/CFS.

Schizophrenia is one of the last diseases I would wish on anyone, but people with schizophrenia scored 21% higher in their QOL scores than people with ME/CFS. The same was true for people with stroke, multiple sclerosis and rheumatoid arthritis.

People with Type I Diabetes, cancer or heart problems had it relatively easy. Their QOL scores were 33% higher than those for people with ME/CFS.

Mean Scores

If the median scores were disturbing, the mean scores were frightening. A significant drop in the mean ME/CFS QOL score surely reflected a significant subset of ME/CFS patients, with very, very low quality of life scores.

This time people with the disease with the next lowest QOL score (again bleeding ulcer) were thirty percent better off. People with lung cancer, stroke, diabetes, etc. had almost 50% higher quality of life than people with ME/CFS.

These are incredible figures. Chronic fatigue syndrome is widely regarded as a rather minor disease and its funding reflects that. This study, though, suggests ME/CFS places a greater burden on those afflicted with it than do many of the most serious diseases of of our time including schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes. Could that really be true?

Time for a reality check.

Reality Check

There was that possible sampling problem. Did the study target a abnormally ill segment of the ME/CFS community? A review of past ME/CFS quality of life and functioning studies suggested the results may have been dead on.

The results of a 2011 British study comparing functioning in people with ME/CFS vs people with rheumatoid arthritis, cancer and depression showed a staggering reduction in functioning in the ME/CFS patients. Except for emotional and mental health scores – which were similar in depression and ME/CFS – all the functional health scores were dramatically worse in ME/CFS patients.

The most significant study to back the recent findings, however, may still be a large 1996 study by Anthony Komaroff published in the American Journal of Medicine. It compared the functional capacity of 233 ME/CFS patients (from a clinic) with thousands of patients in other disease groups (hypertension – 2,089, congestive heart failure – 216, type II diabetes – 163, heart attack – 107, multiple sclerosis -25 and depression – 502).

Komaroff found people with ME/CFS scored lower than all the other diseases on all the functional scales, again, except for the emotional and mental scales for people with depression.

(Komaroff also found both the degree and kind of functional impairment found in ME/CFS was different from that found in depression. Studies indicate that the scores for the emotional and mental functional subcategories are similar in depression and ME/CFS. What’s different are the far lower physical functionality, vitality and other scores found in ME/CFS.)

Other smaller studies have had similar results. In fact no disease yet assessed has had a greater or even equivalent impact on QOL or functioning as has chronic fatigue syndrome.

A 2011 Italian study found lower quality of life scores in ME/CFS vs hepatitis C. A large 1996 U.S. study found lower physical and social functioning, general health, and body pain scores in ME/CFS patients versus those with acute mononucleosis. In both studies the depth of the fatigue present was the most significant factor in determining QOL.

My guess is that QOL issues in ME/CFS are so significant because, besides the sheer discomfort the disease causes, it strikes at the core of who we are as humans. Our nature is to be physically and mentally active. Taking away our ability to work, to socialize, to exercise – is taking away something very precious. Other diseases cause reduced functionality, but few appear to do so on the scale that ME/CFS often does.

These studies suggest that people with ME/CFS get hit harder and in more ways than any disease that’s been tested yet. That was reflected in the incredibly low employment levels found in this study – just 7.6% – and the very high rates of disability (52%).

The NIH’s Stark Choice

This is a rough disease. Functionality and quality of life studies indicate that it’s one the roughest diseases to have. They also provide another set of tools advocates can use to push the NIH and CDC to provide appropriate levels of support.

The chronic fatigue syndrome community has a lot going against it at the NIH. It has some real ammo as well.

These studies indicate the NIH faces a stark choice. It can choose to support people who have one of the most difficult disorders found, or it can continue on its way and stop pretending that it’s committed to improving the health of all Americans. It can start providing support based on the needs of it’s clients – the American public – or it can acknowledge that it’s an institution that discriminates.

If the NIH can’t finally step up to the plate a different mission statement would be more appropriate:

NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability….in Americans with the illnesses we have decided to support. (Others need not apply).

Doing Our Part

Every advocacy blog Health Rising puts out over the next couple of months is going to include a request to join the #MEAction project created by Jen Brea and Beth Mazur. The #MEAction project is comitted to being a one-stop advocacy portal for ME/CFS advocacy.

I call your attention to two petitions to increase funding for ME/CFS found on the site. Petitions, by themselves are not going to change anything but they are easy to do and over time, in conjunction with other efforts they can provide evidence of a communities commitment. Please, sign the petitions and join #MEAction.

Keep Health Rising Rising!

64 Comments

Your Alternate NIH Mission Statement made me laugh, Cort. If only people/institutions were so clear about their true intentions/priorities. What a lot of confusion that would save!

Martha

Kate
on August 5, 2015 at 5:18 pm

Cort, it made me laugh too! And I do think it would be prudent to stop repeating that this disease cannot kill you. There is ample evidence that it can and does. It is just that, like AIDS in the early years, doctors must recognize the true cause of death behind the immediate organ failure or tumor.

Cort Johnson
on August 5, 2015 at 6:18 pm

Agreed, it’s more accurate to say that it probably won’t kill you. I actually removed that line entirely. Who knows what bottom of the barrel functionality can do to you over time anyway. If it can knock you out that completely….why not more?

Helen
on August 5, 2015 at 2:48 pm

Absolutely agree EXCEPT with the statement ME/CFS at it’s worst CAN and frequently does kill.

Blue Humphries
on August 5, 2015 at 3:54 pm

Why? There are MANY deaths attributed to ME/CFS.

Cort Johnson
on August 5, 2015 at 6:12 pm

Not as commonly as found in heart disease, cancer, multiple sclerosis, etc. I did misstate, though – – thanks for pointing that out and I removed that sentence from the blog.

Brenda
on August 7, 2015 at 7:40 am

I think suicide counts as a “death result,” too, as patients seek a way of ending the suffering, poverty, isolation, and disrespect that piles up as the years move along and we are left behind by life.

Cort Johnson
on August 7, 2015 at 6:21 pm

Yes, indeed. Of course it does. It says an awful lot.

Helen
on August 5, 2015 at 2:51 pm

Brain fog moment – what I meant to say was Absolutely agree EXCEPT with the statement “As has been noted many times, ME/CFS at its worst can do everything but kill you.”

ME/CFS at it’s worst CAN and frequently does kill.

Though many times the deaths are attributed to other causes that the medical establishment takes more seriously and “believes” in.

Cort Johnson
on August 5, 2015 at 6:15 pm

I guess time will tell on that one. You could certainly be right. Perhaps what counts here is that the feds don’t view it as a disease that causes much mortality and if they did – things might be different. I was told by a lobbyist that if ME/CFS was killing a lot of people he could get money for us in a second.

Gary
on August 5, 2015 at 3:28 pm

Why not focus on the causes of this syndrome so that the real issue can be dealt with? I bet a good 90% of the people who are diagnosed with CFS are infected with Tick Borne Infections (TBI). No one even thinks about this possibility. Wonder why not???

Sue
on August 5, 2015 at 6:15 pm

Except almost all of us have been tested to death for Lymes and some have even gone through the so called LLMD’s and Inegex? and have not tested positive.

Don’t get me started on the cluster outbreaks of hundreds becoming ill in hospitals and even across miles in the dead of winter.

Gijs
on August 6, 2015 at 4:02 am

How do you know it is 90%? I don’t believe this. It would be to ‘ simple’ as a cause for CFS. I do believe some of us could have (chronic) Lyme.

christine
on August 5, 2015 at 3:31 pm

i cried as i read your article, Cort. When are they ever going to get it/… my keyboard’s question marks don’t work… i am in Canada, so have followed the news from the States at a bit of a distance. The iom report findings were given to the nih almost a year ago, were they not/ Do we have any idea how they’ve been received, and if the recommendations made are going to be accepted/
i’ve been deathly sick for 14 years, with no treatment at all except for nutraceuticals and compression garments to try and compensate for my failing heart and everything else that doesn’t work anymore. The ignorance of medical and governmental bodies takes my breath … and my hope… away. Thank God for this community.

Christine m.

Christian Godbout
on August 5, 2015 at 3:42 pm

Reading this reminds me of a Tom Hennessy quote very aptly suggesting the nightmare it is to live with severe ME, with a touch of dark humor: “If you see an ME litterate doctor, he will tell you he has good news and bad news. The good news is this disease probably won’t kill you. The bad news is this disease probably won’t kill you.”

Cort Johnson
on August 5, 2015 at 6:28 pm

Perfect – that’s what I meant to say but didn’t. Thanks

Tom was good!

Dee VanDine
on August 10, 2015 at 11:04 am

that’s what i was told 25 years ago. guilt is the only thing keeping me alive.

Blue Humphries
on August 5, 2015 at 3:58 pm

My life is getting shorter and “less” as the days go on. I am now virtually housebound leaving my home for approx 2-3hrs every fortnight. So, i totally get this survey and the lack of understanding & treatment etc in the UK is negligible

Margaret
on August 7, 2015 at 10:31 am

Absolutely right Blue Humphries, treatment in the UK is negligible. If you are lucky you will get referred to a “specialist clinic” which could be many miles away meaning painful travel, IF you can get there. Then the best you get is a confirmation of diagnosis, a brief discussion about pacing etc and maybe a handful of follow up phone calls for moral support.

No such thing as an NHS consultant, and the private ones are few and far between and only accessible by those with money. And don’t get me started on the GPs and doctors that STILL don’t even recognise it as a genuine condition, or claim it’s all in the mind. Although to be fair I have found one of the good ones who is very supportive and does what she can, but what is available to her and consequently to me is extremely limited. I have been on long term sick unable to work for over four years so, because of this condition, I barely have enough money to pay the bills. The chances of ever being able to pay for treatment are zero until I am better and can work again. Bit of a catch 22 that.

There are so many truths in this article and STILL it’s all but ignored by many in the medical profession.

Cort Johnson
on August 7, 2015 at 6:18 pm

Hopefully this study and others are bricks helping build the foundation so that others don’t have to go through this.

Cort (or anyone that knows), sorry, but I don’t fully understand the charts. In the first one, what do the black lines mean? The ones that look like this: |——|

On the second chart, what does PF, RP, BP, GH, VT, etc., stand for?

Maybe I just missed the “key” or maybe these are standard symbols or abbreviations?

Thanks.

Cort Johnson
on August 5, 2015 at 6:10 pm

PF RP BP GH VT are all different assessments of functionality tested using the Medical Outcomes Short Form Health Survey (SF-36). It’s used to assess the impact of diseases. The abbreviations stand for

Being a suferer I can believe the findings of these studies. What I personally believe is that support and understanding from the medical community would go a long way in helping the overall QOL of CFS/ME patients. I have been one of the lucky few (UK) who have had long term medical support and it has meant I have maintained part time employment. However I have not been able to get support from occupational health at my work place because quote – “ME is just a label they give you when they can’t find anything wrong with you” and I have had no help from local government in the form of financial aid (I can’t even afford my prescriptions for needed medication) or ablility to get a blue badge to help me stay in work due to blatant discrimination (by the company used to asses for a Blue Badge). Having this illness means you have to fight harder than any other chronic disease just to maintain a life at all which I believe adds to the lower level of QOL for us, fighting for help or recognition in itself is demoralising and frustrating.

Margaret
on August 8, 2015 at 2:42 am

Yes you are right Tori. Support and understanding from the medical profession would go a long way to improving our QoL. For instance in my case, I had to fight so hard to get my condition recognised it did not happen until things had got so bad I had a breakdown and had to give up work. I am now having to fight from way down the bottom and the battle is actually harder than ever from a medical point of view.

But it’s not just doctors recognition that is the problem. Because the medical profession still has so much scepticism in it about the condition, that transfers into the working world and society in general. Trying to keep a job is made even harder because employers don’t really understand. Trying to keep any sort of a social life is made even harder because society doesn’t really understand. Trying to manage your finances is made even harder when banks, utility companies etc etc don’t really understand the condition. And perhaps the saddest and most frustrating one is when I recently went the hospital for treatment of yet another ear infection, this time a persistent bacterial and a fungal infection in both ears, and the apparently newly trained doctor asked what other conditions I had then said “CFS/ME, what’s that then”. I can only assume from that comment that they still aren’t being taught about the condition in medical school. Yet in England alone there are known to be over 200,000 sufferers, and that is not counting the ones who are still struggling for a diagnosis.

It’s no the wonder quality of life is such an issue when everything becomes such a battle for people with an already debilitating chronic condition!

Gary
on August 5, 2015 at 5:47 pm

Sounds a lot like Lyme Disease. How many of you have been tested for Tick Borne Infections? I have all the same symptoms that come with CFS. I was diagnosed with Lyme Disease. That’s often the cause of CFS, among other things. Is this not something to consider looking into?

Cort Johnson
on August 5, 2015 at 6:08 pm

Sure it is…I think more people are thinking about that than before.

Sue
on August 5, 2015 at 6:18 pm

Yes, I have many times and many others have also. Your doctor did not do his/her due diligence before diagnosing you. Because a Lyme test as well as many other tests are run first.

Nessa
on August 6, 2015 at 7:42 am

I have been tested for everything including Cancer, Lyme Disease, etc. So don’t tell me my Fibro and other 14 autoimmune conditions are not real. I was born with at least one of those conditions and my life has been turned upside down since I finally took my husbands advice and switched to a doctor who actually listened and tested me for everything.

Sorry, if my first reply to anything came across as me being upset, but I’m tired of people telling me that my health issues are something else when they are not.

Sue
on August 6, 2015 at 11:14 am

@Nessa – LIKE!

Pendergast
on August 5, 2015 at 6:07 pm

I can’t read the whole study ( Brain fog plus poor english level). But depression being so close with ME in the scale’s table make me wonder if some people ( Drs?) could think that patient’s subjetivity is a key factor in this study ( even if depression and ME are well diferentiated in others studies).

Any thoughts?

Kym
on August 5, 2015 at 6:09 pm

This is a very timely subject for me. I have “failed” at so much, over a short time, that I feel absolutely incompetent and embarassed. I have moved to another state to be near my only child who has fibromyalgia and an primary immune deficiency (as I do). She is starting college this Fall. My mother and brother died in 2014.

My rational mind tells me I have done a lot! But, I’ve made costly mistakes that my inner critic screams and ridicules me for over and over. Others are frustrated with me,too.

These studies are good for me to take seriously to set reasonal goals for the “me” that I am, not the “me” I used to be. I think we all mourn for that former self.

I really, really want to get well. And, I how I wish I could lessen my daughter’s pain. She has lived with it since she was 10 years old. She is much kinder to herself and has a greater ability to pace than I do.

I appreciate everyone here for speaking out.

Kym
on August 5, 2015 at 6:13 pm

I’d like to clarify: I want both my daughter and myself to get well. And, if only one of us could — I’d give her the opportunity, no question. My comment above comes off sounding different than I meant it.

Cort Johnson
on August 5, 2015 at 6:37 pm

Good luck Kym. I thin we all struggle with that oh so harsh inner critic. I know I do. I liked what someone said in a Landmark Seminar I was in – if someone came up to you and said to you the things you say to you about yourself – you’d punch them in the face!

One of my goals is just to lighten up a bit – turn off that critic! Good luck with that!

This is a very revealing study showing just how life altering and crushing this illness is. I’m quite sure anyone with ME/CFS would agree with these results showing how serious it is. Now how can this be made required reading for the people in charge of doling out research funding at the N.I.H.? They are in control of a vast budget that the U.S. taxpayers have entrusted with them to use in the best manner. I.M.O. the meager funding of this illness to this point should be considered indefensible by these decision makers and there needs to be an accounting of this. If our illness were to be funded in accordance with the amount of people affected and by how debilitating it is, then the funding should be near the very top – to the tune of hundreds of millions of dollars annually. I fear we are in a forever futile position if we are content in begging for scraps. People making funding choices have been derelict in their duty and need to be taken to task. Studies like this are available for them to read if they are inclined to learn how dire our situations are. What can we do to make sure these people take us seriously?
Many of us have paid taxes for years (and would like to be able to be contributing members of society again) and have expected our $ to be used to fund the most worthy needs. These agencies are designed to serve the people and this is one instance where they have failed miserably for decades.
Thanks again, Cort, for bringing studies such as this to light.

Erin
on August 5, 2015 at 9:12 pm

I was diagnosed with CFS 32 years ago. Living in Chronic Pain which hovers around 9-10 on pain scale 24/7. Is Fibromyalgia related to CFS? Most recently diagnosed with Fibromyalgia. (sorry for jumbled words. ..brainfog)

Sharna
on August 9, 2015 at 1:12 pm

Yes usually if you have CFS, you’ll have Fibro.. many of the same symptoms 🙂 🙁

It is my understanding that CFIDS and Fibromyalgia are very similar, related illnesses. I have them both, as well as an autoimmune disorder and arthritis. I have been ill with CFIDS for about 26 years.

The lack of understanding of this illness, even among the medical establishment, is very hard to deal with. Doing one’s own research in terms of daily detoxing, nutrition, activity pacing, etc. has been most helpful for me.

Erin, have you tried capsaicin cream for the pain? It works by blocking substance P, which is elevated in fibro people. I use aloe vera gel along with it, to keep it from burning and itching. Works very well for the pain.

God bless all of you.

Ahmed
on August 6, 2015 at 6:22 am

Being an MSer myself and my better half being diagnosed with ME/CFS last year, I found this information rather exciting but worrying at the same time.
The exciting part is that ME/CFS is finally on its way to becoming accepted and recognised by society but the worrying part is all the complications an illness this savage can cause.
Do the poor people dealt the ME/CFS card have to collapse before their illness is accepted as REAL!

Christine (Scotland)
on August 6, 2015 at 7:37 am

I don’t think it can be possible that those who have the power to change funding of either research or treatments are ignorant of this kind of research but this is a good study.

I had breast cancer in 2012 and am still waiting for the ‘all-clear’. I can confirm first hand that it was a considerably better experience related to ME/CFS. In my darkest moments – I have prayed to anybody listening – that the BC recurs and kills me quickly. I’m not being dramatic because now that I feel a little better, I am praying that it doesn’t!

Deb
on August 6, 2015 at 10:39 am

I find this interesting but the one thing that bothers me is that Functional scales are patients filling out how they think and feel so how does this prove that the disease is much worse physically especially when you rate it next to cancer of all things. To me this only proves that patients mentally are saying they are feel worse than any of these others on the comparison of functional scales. I have to wonder and I can say this because I am severe but have a very positive and happy disposition in spite of all that is wrong….if this is really more indicative of what this disease does psychologically to the patient then it does physically. And a lot of that may be due to the patients feeling abandoned and ignored and put down. We did functional scales in a group I am in and I had people who could still be up, go out once a week, take care of themselves rated as much lower than me who requires two caretakers. So, I am unsure how to take this report.

Deb
on August 6, 2015 at 10:43 am

And to be honest, I fear functional scales will make them turn more and more to saying this is psychological than physical and that worries me. I have had to fight hard for the care I have but I see that even the SEIDS name change did nothing to change views and worry about this. I do think that this illness dramatically impacts people and especially the severe and mad worse by the need to prove we are sick all the time.

Cort Johnson
on August 6, 2015 at 1:16 pm

Functional scales are used in all diseases. There’s no reason that I can think of for them to be perceived as psychological in ME/CFS and real in others diseases. There’s no scientific basis to make that assumption that I know of.

Deb
on August 6, 2015 at 4:20 pm

My reason for stating that is that it is a subjective test and not one that has anything to substantiate that a person is worse than these other people except for what they say about themselves. I do not think they are psychological. That is not what I said. I said I worried some would look at subjective functional scales and might think the people marking might be embellishing what they mark. I did not say there was any scientific evidence to support this but neither is there any scientific evidence to support what the title says. There are so many variables such as that maybe people with cancer have a brighter outlook on their situation than someone with ME/CFS which would be understandable.
This is not saying that it has been proven that ME/CFS is worse than Cancer, etc. It is saying that the way ME/CFS patients rate themselves they see themselves as worse and I believe that is because of the abandonment of us by the medical community at large and the way doctors and the community at large act about this dx. And that is not referring to the renowned doctors who are working on it. Many of us feel hopeless, many of us feel helpless and that is because of how ME/CFS patients are treated by so many.

Pendergast
on August 6, 2015 at 5:06 pm

That is what I was thinking too. Maybe that subjectivity is why depression is at the second place in the ranking too.

But even so, the subjectivity should be considered real for all the patients in all the diseases I think.

Proving I am sick and tired in my family makes me so much more sicker and more tired from the stress of them not understanding why my husband does so much work around the house . Almost everything actually . It embarrasses me and a few of them have turned against me recently after they found out . They apparently think I am very lazy . I have been hiding it for over twenty years but they recently found out . Can you imagine having to hide something like that ? Not the illness but the fact that I am so disabled . And they don’t look it up they just make assumptions . Also to me looking it upon e does not tell the story anyway . Much research from doctors plus , most importantly the many many many testimonials are what tell the story . I don’t think they would completely believe it anyway cause I don’t often look sick to them .

Michael
on August 6, 2015 at 2:25 pm

Hi Cort, first I want to say thanks for all you do here. I also want to ask something I’ve been wondering for a long time. Please don’t take it as a criticism. I am wondering why you use “Chronic Fatigue Syndrome”, sometimes exclusively, as you have done in the title of this article?

Even if you are quoting the title of the original article in your title, I think we can all agree that using the term “Chronic Fatigue Syndrome” really sets the cause of the illness back. Whether you realize it or not you are in a pretty influential position. So, I’m wondering what is behind your choice to use that term, instead of say ‘ME/CFS’, just ‘ME’, ‘myalgic encephalomyelitis’, or ‘SEID’ etc?

Cort Johnson
on August 6, 2015 at 2:33 pm

I don’t like the term either. I kind of flinch when I use it but I use it in the title and every now and then in the body of the blog for search engine purposes – in order to get the blog as much spread as possible.

SueL
on August 6, 2015 at 4:15 pm

Hi, I think perhaps it is time to take a stand against the use of the term “chronic fatigue syndrome”. Please consider that, yes, you are getting more page hits by using it, but unfortunately, and unintentionally, you are aiding in the spread of bad ideas about this illness.

Your blog is very positive for the ME community, don’t get me wrong!! But I think the use of the term CFS provides a net negative impact on the community as a whole.

As a member of the ME community, I’d gladly see less exposure in the short term if it meant I didn’t have to see the name “chronic fatigue syndrome” any more. It does so much damage. It ain’t worth it IMO 🙂

I think not using “chronic fatigue syndrome” might cause short term pain (web hits, media attention/confusion) but will provide long term gain.

I’m praying you will be one of the key players who refuses to use the term and starts a trend.

Tally
on August 6, 2015 at 7:09 pm

I think you made a good choice. Hopefully a sceptical doctor might search for chornic fatigue syndrome and come across an article from you such as this one and realize what a serious and devastating illness it is.

I think 99,9% of doctors haven’t even heard of the term SEID yet.

Dee
on August 10, 2015 at 11:28 am

what does SEID stand for?

i believe that the term chronic fatigue still needs to be used. 25 years ago, when i first became very ill, they wanted to change the name. there was an awareness problem back then, as well. so, in my mind, narrowing the field of view would be a mistake.

Cort Johnson
on August 11, 2015 at 11:22 am

Systemic exertional intolerance disease I think it is.

You’ve got a point!

Anon
on August 6, 2015 at 6:55 pm

As a personal note about the name, or names, I think all of them are stupid. And make things worse, not better, in many cases. However, we’re stuck with whatever someone else plucked out of the air.

About doctors not believing . . . recently I was looking through old (paper) files and came across newspaper article that I had clipped out.

The byline said Daniel Goleman, The New York Times. And the headline said, “Patients who refuse to be well.”

Guess there are still plenty of doctors who think that way? It isn’t just our fault, it’s our fault because we “refuse to be well.”

Breathtaking.

Merida
on August 7, 2015 at 11:04 pm

Why don’t we all write a letter to Daniel Goleman? These kinds of statements are devastating for all of us.

Gijs
on August 7, 2015 at 7:51 am

I do not think it should be a competition among diseases. Each disease is undesirable. Having that said ME / CFS is a highly disabling disease. It’s the longest and meanest invisible disease there is.

Cort Johnson
on August 7, 2015 at 6:21 pm

That definitely says something!

Sue
on August 7, 2015 at 7:54 pm

Well, funding for ME/CFS just got cut in half so… GAME ON!

Donna
on August 9, 2015 at 2:11 pm

A big problem with the name, major problems with funding, severe suffering without understanding from the medical community, mostly the same from one’s family/friends,
can’t really live, 34 years with not a lot of hope on the horizon. Of course it’s depressing, but I fight that thinking, as hard as it is. When I read your comments it gives me hope. I remember the days when there was nothing to read about this illness, and certainly no one to talk to. When I read the words from people who have what I have, it’s miraculous!

Thank you, Cort, and everyone who struggles to express themselves. It really helps. There has been progress—among ourselves.

Dee VanDine
on August 10, 2015 at 11:33 am

thank you so much for your efforts in setting up MEAction and all the related online help. just discovered you on 8/8/15 and am sooooooo grateful to have found this forum. {{{big hug}}}

It’s hard for public to judge if they had this disease. Usually we care about the condition of ourself, but mostly we just igorne some signals from our body not so obviously. Is there suggestion for how to tell if someone is with ME/CFS?

Gibbo
on August 20, 2015 at 5:08 am

I have other autoimmune disease but POTS or CFS or what ever you want to call it is the one that makes my life the hardest by a country mile.

Carolyn
on October 1, 2015 at 10:32 pm

Had this disease CFS over 25years pacing is the best way to get by. Trying gut flora treatment from Natropath. Was bed ridden for two years horrible time funding is a joke any where you live.keep surviving.

Cory could you please send me responses to what I put up ? I would appreciate any suggestions . I meant cort . On my email . Thank you and thanks for this web site . I think I was supposed to check something off to receive emails but I didn’t notice it till I sent in my statement .oh I just checked it ! But not on the previous thing I sent in .